Managing My MM Treatment Neuropathy Pain:
Well, here's my Longest Post ever - It's going to be around 10 parts.
My Induction in 2021, though quickly returning me to MM Cancer Free, the MM Meds of DarzFasPro+RVd (most likely the Velcade) has left me with very extreme neuropathy. I'm MRD Negative, no SCT, and No MM Meds but my Neuropathy has been my last remnants of the nightmare of these last 3 years.
I've tried many things over the past 3 years. First Gabapentin, then Cymbalta, and then Lyrica (one at a time). I've tried acupuncture… read more
Part 10:
The Alternatives of Gabapentin, Cymbalta, Lyrica all have side effects of brain fog and fatigue.
Supplements and related solutions have never helped me in any meaningful way. I'll continue with an effort to replace Ritalin but for now it and Melatonin are working quite well.
I plan to try CBD Tinctures to see if there's any chance it can be of help.
Neuropathy is incredibly difficult to live with. If anyone has found a solution, they're able to live with, I'm very interested to hear what's working.
If anyone can replicate my results with my current remedy, please Post to this Thread. I'm always looking for confirmation of my findings, in hopes that with enough evidence of success it can become something the medical community will consider through Clinical Trials.
All the Best
Part 9:
7. Gene Therapy and Experimental Treatments:
• There is ongoing research into treatments that could specifically target the molecular mechanisms underlying chemotherapy-induced neuropathy. In the future, therapies aimed at reversing nerve damage at the genetic or cellular level may become available, though these treatments are still in the experimental stages.
• RAS gene mutations or other genetic factors could potentially be addressed with new personalized medicine approaches, but these therapies are not yet standard or widely available for neuropathy related to chemotherapy.
8. Gradual Recovery Post-Treatment:
• In some cases, nerve damage may partially improve over time after stopping the chemotherapy. While full recovery is rare, patients may notice some reduction in the severity of symptoms, particularly if intervention occurs early.
Conclusion:
While complete reversal of nerve damage caused by Velcade or chemotherapy-induced peripheral neuropathy may not be possible in all cases, various treatments can manage symptoms, reduce pain, and potentially improve nerve function. Early detection, dose adjustment, medications, physical therapy, nutritional support, and alternative therapies can all help alleviate symptoms and improve quality of life. It's important for patients to work closely with their healthcare team to tailor a management plan based on their specific symptoms and needs.
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As for the Reversal and Pain Management. I've tried all of the typical items as per above with no relief.
An interesting comment from above:
• RAS gene mutations or other genetic factors could potentially be addressed with new personalized medicine approaches, but these therapies are not yet standard or widely available for neuropathy related to chemotherapy.
I plan to get my RAS genes tested. I'm wondering if I have RAS genetic errors that would have indicated that the use of Velcade was destined to cause so much damage.
I've read Stories where some people take Velcade for years without ever having neuropathy problems or other side effects. I've also read Stories, similar to mine where they've quickly and permanently have very serve neuropathy.
My Current Fix:
Ritalin and Melatonin has become my solution that I can live with, without side effects, long term and with great relief.
During the past 18 months, as I've used Ritalin, I've asked my GP, Neurologist, Oncologist and others as regards long term use. Provided I don't abuse it through excessive use, they see no long term complications. For sure as I phased out from 30mg to 15mg daily and then to none, I could tell me body was accustomed to having my daily Ritalin but over the course of a month, it was easy to transition to none daily.
Part 7:
3. Cytotoxic Effects and RAS Signaling:The RAS pathway is known to play a role in cell survival and apoptosis (programmed cell death). If the RAS signaling is dysregulated due to mutations, it could affect how nerve cells respond to Velcade-induced damage. The mutation could either suppress nerve cell repair mechanisms or exacerbate the toxicity of Velcade on nerves.
4. Combination with Other Chemotherapy Drugs:RAS mutations are often found in cancers treated with multiple chemotherapy agents, not just Velcade. If the patient is receiving combination chemotherapy, it’s possible that cumulative toxic effects from multiple drugs, alongside a compromised RAS pathway, could contribute to more severe or long-lasting neuropathy.
Clinical Evidence:
While there is no conclusive, direct evidence that specifically links RAS mutations to increased neuropathy risk from Velcade, there are several studies suggesting that genetic variations and mutations (including in genes like RAS) can influence the side effect profile of chemotherapy agents. Genetic factors, including those affecting drug metabolism and response pathways, may modulate how well patients tolerate chemotherapy drugs and their associated side effects like neuropathy.
Conclusion:
While there is not enough direct clinical evidence to definitively say that RAS gene defects cause Velcade (bortezomib) to cause more severe nerve damage, it is plausible that RAS mutations could increase the risk or severity of neuropathy in these patients, due to changes in how nerve cells respond to stress, damage, and drug metabolism. If you or someone you know has RAS mutations and is being treated with Velcade, it is important to closely monitor for symptoms of neuropathy and discuss these concerns with a healthcare provider, who may adjust the treatment or take preventive measures to manage side effects.
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Next Question:
4) is there anyway to reverse Velcade's damage
Reversing nerve damage caused by Velcade (bortezomib) and chemotherapy-induced peripheral neuropathy (CIPN) can be challenging, as the damage can be long-lasting or even permanent in some cases. However, there are strategies to manage, reduce, and possibly improve symptoms of nerve damage, depending on the severity and individual response.
1. Early Intervention:
• Early detection and intervention are crucial to preventing irreversible damage. If neuropathy symptoms are detected early (e.g., tingling, numbness, pain in the hands or feet), doctors may reduce the Velcade dosage or change the treatment regimen to limit further damage.
• Pacing treatment or dose reduction is a common strategy to minimize nerve toxicity during cancer treatment.
Hi Larry, I am grateful for your deep investigative reporting. I have to admit that I am lucky I am on Valcade treatment almost for 2 1/2 years no issue at all. My oldest son calls me cockroach 😀 all poison doctors troughs at me I survived for now. I have other issues at the moment my very poorly doing kidneys are causing problems and the heart is weak so I have fun stuff on my agenda: petscan, bone marrow biopsy and ultrasound. Doctor calls me stoic, but what choice do we have other than making the best out of what we still have. We are so gifted that we have you on our side always sharing your thoughts. Thank you so much for all your work to submit your knowledge to us. Wishing you and your family a wonderful thanksgiving. I hope you find something for the neuropathy problems you have to endure. God bless you.
Part 8:
2. Medications for Symptom Management:
• Pain relievers: Over-the-counter or prescription pain medications, such as acetaminophen or NSAIDs, can help manage mild to moderate pain.
• Antidepressants: Certain antidepressants, such as duloxetine (Cymbalta), are often prescribed for nerve pain, as they can help manage pain through their effect on serotonin and norepinephrine in the brain and nervous system.
• Anticonvulsants: Medications like gabapentin or pregabalin are frequently used to treat nerve pain. These drugs can help reduce the sensation of pain or discomfort from neuropathy.
• Topical treatments: Lidocaine patches or capsaicin cream may provide localized relief from pain.
3. Physical Therapy and Occupational Therapy:
• Physical therapy can help strengthen muscles and improve coordination, which may be affected by neuropathy.
• Occupational therapy can assist patients in adjusting to daily life with neuropathy by suggesting adaptive tools and strategies to reduce the impact of sensory changes and improve function.
4. Nutritional Support and Supplements:
• Some evidence suggests that vitamin B12, alpha-lipoic acid, acetyl-L-carnitine, and omega-3 fatty acids may help improve nerve function or reduce nerve pain. These supplements may support nerve health and function, though results are variable.
• Folate and vitamin E have also been considered for their potential to protect against nerve damage, but clinical evidence on their effectiveness for chemotherapy-induced neuropathy is mixed.
• A balanced diet rich in antioxidants, vitamins, and minerals is essential for overall nerve health and repair.
5. Alternative Therapies:
• Acupuncture: Some studies suggest that acupuncture may help alleviate symptoms of chemotherapy-induced neuropathy, such as pain and numbness.
• TENS (Transcutaneous Electrical Nerve Stimulation): This therapy involves applying mild electrical currents to the skin and has shown promise in reducing pain and improving quality of life for individuals with neuropathy.
• Massage therapy and other forms of relaxation techniques may help improve circulation and reduce discomfort associated with neuropathy.
6. Monitoring and Long-term Care:
• Ongoing monitoring is necessary to assess whether neuropathy is improving or worsening. Some individuals may experience gradual recovery after discontinuing the drug, while others may not show significant improvement.
• If the nerve damage is significant, it may become chronic, leading to long-term symptoms like persistent pain or difficulty walking. In these cases, managing the symptoms becomes the primary focus, and patients may need to adjust their lifestyle and activities to accommodate changes in their sensory perception or mobility.
Can Anybody Give Any Recommendations For Stuff To Do To Help With The Neuropathy And My Feet From My Treatment
Does Anyone Take B-Complex And Alpha Lipoic Acid
What Treatment Can Anyone Recommend For Neuropathy On My Feet And Toes?